Abstract P6-06-01: Development of a patient advocate training at UNC’s Lineberger Comprehensive Cancer Center
Authors: Kathryn L. Kennedy, Angelica M. Mejia, Emily K. Walton, Joia Freeman, Alice Lu, Jennifer A. Potter, Patty Spears
Journal: Cancer Research (2023)

Abstract Development of a patient advocate training at UNC’s Lineberger Comprehensive Cancer Center Introduction: Patient advocates are survivors, caregivers, or people affected by cancer who represent the patient experience and bring a nonscientific viewpoint to the research process. Based on a previous assessment of engagement related needs of researchers and patient advocates at UNC’s Lineberger Comprehensive Cancer Center (LCCC), the need for a comprehensive training for patient advocates was identified to better facilitate collaboration in cancer research, including learning more about the role of patient advocates to prepare them for meaningful interactions with researchers. Purpose: To provide an engaging, empowering training for patient advocates involved in (or interested in becoming involved in) research projects with faculty and staff of LCCC. LCCC is committed to offering trainings that better equip researchers and patient advocates to meaningfully work together. This training will be the first step towards that goal and introducing patient advocates to patient advocacy, LCCC’s programs and services, and working with researchers. Methods: Prior to designing the patient advocate training, we, the student team working with LCCC, created a Curriculum Adaptation Plan and Diversity, Equity, and Inclusion (DEI) plan to include implementation steps along with questions to ask, items to consider, and examples organized by section. We then conducted three interviews with members of LCCC to collect qualitative data on existing, external patient advocate trainings and provide insight on best practices. Using our findings, we created a five-part training to better equip advocates for research partnership. We reviewed the training for health literacy and to ensure alignment with the Curriculum Adaptation and DEI plans. Lastly, we facilitated a one-hour focus group via Zoom with experienced patient advocates to receive feedback on the training. As a result, we integrated key changes into the final training to encourage participants that all comments and questions are welcome, add clear definitions of patient advocacy, and include an optional activity reviewing research abstracts. Results: We developed a training to engage patient advocates involved or interested in becoming involved in research projects at LCCC. Training objectives include understanding LCCC’s goals and the role of patient advocacy, building a sense of community and passion for advocacy, and gaining confidence in providing feedback on research materials. The training consists of a facilitator script and outline, PowerPoint slide deck, handouts, and an evaluation survey to be delivered in a two-hour hybrid synchronous format. Training content is organized into five parts: Welcome and Introductions, Purpose of Training and Introduction to LCCC, What is Patient Advocacy at LCCC?, Practice Giving Feedback, and Conclusion. The training is designed to be skills-based, consisting of group discussions, an interview with a current patient advocate-researcher pair, and the opportunity for participants to make suggestions on research materials. Recommendations: Based on our recommendations, LCCC will offer the training as onboarding for new patient advocates with the option for seasoned patient advocates to attend as a refresher. An individual with direct involvement with patient advocates and researchers will lead the training. To tailor to varying patient advocates’ experience and knowledge, more advanced research examples based on participants’ experience in advocacy should be included. LCCC will use this training and consider ways to provide iterations of the training in other languages and engage individuals from different cultural backgrounds disproportionately burdened by cancer and not commonly involved in patient advocacy. We propose a scale-up implementation at other institutions to adapt this patient advocate training. Citation Format: Kathryn L. Kennedy, Angelica M. Mejia, Emily K. Walton, Joia Freeman, Alice Lu, Jennifer A. Potter, Patty Spears. Development of a patient advocate training at UNC’s Lineberger Comprehensive Cancer Center [abstract]. In: Proceedings of the 2022 San Antonio Breast Cancer Symposium; 2022 Dec 6-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2023;83(5 Suppl):Abstract nr P6-06-01.